where every day is an adventure

Author: AlanaMarie

I have been dealing with mental health, and not doing too well. I have almost no motivation to do anything. I am activly taking steps to fix it though. I met with a therapist yesterday and I’m waiting on a callback from a Psychologist for an appointment. I have good days and bad, up and down, but mostly my days are unmotivated and lazy, trying to make sense of what I need to get done.

We moved over the summer, we had a 3 week road trip from California to Massachusetts, where we now live. It’s been an experience in itself. Driving with the kids was wild and I don’t know how I did it. But here we are, we have a cute little Cape Cod style house, it’s not too big and not too small. I am really enjoying it. It rains about once a week, which is 500% more often than it ever rained in California. It’s been cool a couple nights then warm again. Today the high is in the high 70’s and tomorrow’s high is supposed to be about 50. I’m both excited for and fearful of winter. I’m excited for the kids to play in the snow, I’m excited for all the winter knits I’m working on. But I’m terrified of driving in the snow.

I knit this guys little sweater, he loves it, he’s such a sweetheart.

This amazing girl started First Grade! I’m so proud of her, she’s going to make waves for sure!

And there is me with a chicken. This was over the summer, My hair is a little longer now, and mostly blonde, and I lef the chicken with my sister, because it’s hers.

It’s been a long time. I’m still around. I think periodically about returning to the world of writing. But I’ve spent a long time dealing with some personal demons. I think I have been battling some depression and I’ve not felt like doing much about it. I also and struggling through the daily life of caring for my two monsters, and the Type One dia-baby is an added handful. My husband was deployed for much of last year and this year I have again struggled with my depression and I’ve struggled to get though basic things like school and housework.
It’s not all been a rough road though. I’ve started knitting again. I’ve been working on tie-dyeing again. And I recently started experimenting with dyeing yarn. I am slowing getting the itch to be myself again.
Depression is a weird thing. I don’t feel “depressed”. But I also don’t really enjoy doing much of anything I once enjoyed doing, to be honest I don’t enjoy doing much of anything.

But I’m working on it, I’m working on myself. We are getting ready to move this summer and I think as much as I have grown quite comfortable in SoCal, I am ready to move on. It’s time to start our next adventure, and one step closer to retirement and finding our forever home.

I’m hoping to keep this up for a bit, perhaps partly for my own mental health, and partly so I have something to look back on in a few years.

Tonight I’m working on cleaning up the old posts merged from the old blog “Fractured Fairy Tales”, I am removing those from here and they will still be available as long as blogspot is still alive. Then I am going to move to the couch and work on some knitting, This week I’ll try to share a post on how that has been going after a VERY long hiatus.

On one hand I am sad to see 2017 go. We had so much happen, some good, some bad, but it was quite a year for my family. It’s a little hard to let go of the year, I know we cannot go back, but part of me wishes we could.
On the other I am so glad to start a new year. A fresh start. Time to take back control of my life, my family, and our health.

So here we are, 2018, we are settling into our new year. From here on out I am going to focus on health. Mental, physical and emotional. For my whole family. I have invested in some crafting materials and I have been enjoying crafting in my spare time. It’s my “mental health break”. I have been working on a Bullet Journal, in an effort to keep track of the things I need to do, the things I want to do, and the other habits I have. I am hopeful that journaling will help me feel like I have better control over things. Also I can remember to do important things, like drink water and do the laundry. I also got an instant pot for Christmas, and I have enjoyed making delicious instant meals for my family, very excited to try more. I am hoping to get back into blogging more regularly too. I want to share my family and my adventures and my creations with the world.

Today we went over the last hurdle in our defunct move to Okinawa, Japan.

In case you are new here, my family was all set to move to Okinawa in May, the movers came to our house, packed up our first shipment and left. That afternoon my son fell incredibly ill and we took him to the hospital. Long story short, he was diagnosed with an autoimmune condition called Type 1 Diabetes. It’s different from the familiar Type 2 diabetes, because he did nothing to cause it, his pancreas just failed to do one of its jobs, and it stopped making insulin.

Before this happened we had shipped our dogs to Japan, so that they could be there when we got there. They are Boston Terriers and unable to travel in the summer months (June-September is no fly for snub nosed dogs). We were only able to get one dog on a flight before the heat embargo, in a very tough decision we decided that Renji would come home because we felt Aiko would be better in a multi dog situation.

As the summer wore on I began to feel a lot of anxiety when I would think about Aiko, I worried a lot about her, even though her caretakers loved her and treated her like family. I received frequent email updates with photos to reassure me of her being well cared for. I think Renji was becoming depressed too. I noticed he spent a lot of time just laying around, he wasn’t playful, he didn’t want to do things. We babysat our neighbors dog a little while ago and Renji lit up with having a playmate, that’s when I realized how sad he has been.

Today we got up and drove to LAX and met with one of the wonderful ladies who fly for Camp Canine Okinawa, and we picked up our little girl.
I have nothing but wonderful things to say about Camp Canine Okinawa, they have treated our pets like family, and they have been wonderful and patient with our difficult situation. Although our situation was really crappy, I am happy the way it happened the way it did, if it were not for Camp Canine I don’t know what we would have done.

It’s been a very long summer but Aiko is finally home. We can now put this behind us and continue to move forward.

I don’t blame anyone, I’m not even that mad anymore that Paul has Type 1 Diabetes.

I mean it sucks, and if I dwell on it long enough I’ll get upset, or angry. But we are doing the best we can with the hand we have been dealt.

And really it could have been worse. I know it’s terrible to ponder upon how much worse things could be, but really, it’s not so bad. Paul has a life long auto immune disease, but he’s alive, and besides the diabetes he’s healthy and he’s happy.

I’m currently sitting up in bed, thinking of ways to procrastinate homework. It’s the middle of the night. My husband is at work. I have two kids and a dog in my bed. It’s not so bad.

I have spent the last 4 months, since his diagnosis, working on adjusting my dreams for our future. I have always had a loose set of plans for what I wanted, where I wanted to go, where I wanted to be, and what I wanted to do. Things have changed, my priorities have re-aligned. I need to make sure we are in a place that we can get the best care for Paul.

Right now, where we are is the best place we can be. We all, as a family, have great medical care, great doctors, and we have amazing resources for Paul. We are comfortable in our home, we are close to a lot of things. As shocking and upsetting as his diagnosis was, this was the best place for it to happen.

My Baby was diagnosed in May with Type 1 Diabetes, we were literally about to move to Japan, Our movers had come the morning before we ended up in the ER. Because of this we went into crisis mode real quick, we had to stop our stuff, we had to deal with my husbands job (US military) and see if we could get his relocation canceled. We had so many people telling us we were handling it (his diagnosis) so well. But I think we were in shock, and trying to deal with canceling our move, and that overshadowed the feelings associated with the diagnosis.

Now we are a few months out and I am find myself getting upset and angry, not at my son, but at the lost opportunities. I am angry that he was dealt this. I am angry that it happened while he was so young. People say it’ll be easier for him because he isn’t going to know any different, he isn’t going to remember a time before diabetes. But I am angry because he never got the chance to not have to worry about his blood sugar, not have to worry about insulin. I’m angry because I worry about caring for him in the future, medical costs, diabetes is expensive, 1 vial of insulin is nearly $300, his insulin pump is like $8,000. We have insurance, but what about when he is on his own? I hope I am wrong, I hope he doesn’t worry about the things I worry about for him. Maybe we will get lucky and in 10 or 15 years they will have a cure.

I feel like our whole lives revolve around blood sugar now. Is he high? Should we take him out because he’s running high? What if we give him too much and his blood sugar crashes? What should we feed him? How many carbs are in that? Do we really want to drive that far, or go to that place, or do that thing, because we will have to deal with his blood sugar. I know we need to still take that drive, go to that place, and do that thing, because he needs to know that it’s okay. But it’s scary to wonder what could happen if we mess up, or if we are unprepared. I always keep his “diabetes bag” with me, it’s got his testing supplies, some snacks if he goes low, and his emergency low kit. But it’s still scary.

Maybe it’s selfish. But I still find myself searching for a way we can move with the kids back to Japan. I am still very upset that we aren’t going back. I wanted the kids to have that experience, I wanted to take my babies to the places we went to, and eat the fun things we ate, to fully immerse them into the Japanese culture that I miss so much. Now I don’t know if they will get that.

When I left you in our last post, we had just learned that Baby had Type 1 Diabetes, and our family would not be moving to Okinawa, Japan.

There was still a lot in the air, would Paul go without us? What would happen to us if he did? What did this diagnosis mean? What about the dogs (who we shipped to Japan in April)? And the stuff the movers just picked up to ship to Japan? We were scheduled to move out of our house in a few weeks, we had plans to sell our cars, we had potential buyers for both.

First I’ll start with Baby’s diagnosis. Type 1 Diabetes. It’s not something we could have prevented. It’s different from the diabetes that you develop later in life, often as a result lifestyle choices. This had nothing to do with what he ate, or how he spent his first year of life. It just happened. His pancreas stopped producing insulin. Likely his pancreas has been slowly dropping in this function for months. Some of the symptoms from decreased insulin are also symptoms that tie in with growing babies, like increased hunger, decreased sleep. These are things that you wouldn’t rush off to the doctor for. But even if we had, even if 4 months ago a doctor had told us that Baby’s pancreas wasn’t doing as well as it was supposed to be doing, there is nothing that would have ‘fixed’ it. This was pretty much inevitable.

So now we found ourselves in the hospital, trying wrap our heads around this diagnosis, and answer all the questions I listed above. I think the stress of figuring out all of the stuff about our move to Japan, sort of overshadowed the diagnosis. Not in a bad way, but in that we didn’t go straight into heartbreak, we weren’t devastated. Our first step was to swiftly go into action to try to deal with our move.

In short we were able to quickly get enrolled in EFMP, which allowed us to speed up the process of getting Baby officially medically disqualified from moving to Okinawa. This disqualification, although depressing, was vital to our goal of having Paul’s orders to Okinawa modified so no one would have to move. We also had to figure out the situation with the dogs. I haven’t talked much about it on social media, but in April we made the decision to send the dogs in advance to Okinawa, so they would be there when we arrived. Most airlines have a heat embargo during the summer from late May-late September. They do not allow snub nosed dogs to fly at all. This is because they overheat easier, thus it’s more dangerous for them to fly. I immediately got to work with our transport company to get the dogs back to America if we had time, because they had already embarked on the most expensive Japanese vacation any dog has ever had. Time wasn’t on our side though and we were only able to get one dog on a last minute flight before the heat embargo, so the other is being kept with the dog transport until she can fly again. It’s not a perfect situation, but it’s the safest for her.

By the time we got all of the above figured out, we had already begun to work on a routine, we had already had our ‘crash course’ in T1 Diabetes management. We were fast learning about insulin, glucose, testing Baby’s blood, checking for ketones, how to properly do injections, how to use an insulin pump, and how to count carbs. We had a few setbacks, we had some really high highs and some lows, but after 9 days we were discharged from the hospital. I really have nothing but positive things to say about the hospital. We had great doctors and nurses, we met some great people, and we are positive about Paul’s future. We have been told over and over, because he is so young, and we are able to establish his care properly, he will never know what life is like before diabetes. Although things seem difficult now, his life should be easier because this happened while he was so young, versus it happening in 5 or 10 years.

We are now home, establishing our new normal, and learning how to keep everyone healthy. We have had a few setbacks, but we are back on track this week. We have been working on putting our home back together, it took a while but we were able to get our stuff that was packed up the morning of his initial hospital trip back, before it left for Japan. Baby Paul had his first birthday a couple weeks ago, and he got more toys and clothes than he could ever imagine.

We were supposed to fly to Okinawa next week. We had planned, gone through all the screenings, gotten passports and airplane tickets, we were ready. A couple of weeks ago, on a Monday morning, the movers came to pack our unaccompanied baggage, which is the stuff we wanted there when we got there. Before this we had all been sick, for about 2 weeks all 4 of us had been fighting a nasty cold. That day baby Paul was really fussy, but he was sick like the rest of us. As the day wore on, the movers came and left with about a quarter of our belongings, the baby seemed okay just cranky.

Later in the afternoon everyone was resting and I took the baby outside to play and I noticed he was randomly gagging, sort of dry heaving. I decided he should nap too. While trying to get him to sleep Paul noticed he was breathing rapidly, shortly after I couldn’t get him to latch on to breastfeed. This was the most concerning symptom because he’s never in his life refused the breast, but it was like he couldn’t latch because he was struggling to breathe.

I rushed him to the ER. I believe they thought he had RSV, he was immediately given a nebulizer, IV fluids and a chest x-ray, which came back normal. The next step was the doctor tested his blood sugar. At that point the doctor told me I needed to call my husband because my baby was going to need to be transferred to the pediatric ICU at the larger medical facility about an hour away. They said he was in Diabetic Ketoacidosis. I didn’t really know what any of this meant, except that he almost surely had Type 1 Diabetes, and if that were true everything was about to change.

Within a few hours we were in an ambulance being transferred to the hospital. Baby was stable but his blood sugar was still way too high, and he still had a huge amount of ketones in his blood, which were basically poisoning his kidneys and liver from what I understand. Once we got to the ICU we quickly met several doctors and nurses which told us there was almost no question he had Diabetes. We spent all night testing babys blood sugar hourly, checking the levels for ketones, and adjusting his insulin and glucose dosages. The first night they wouldn’t let me breastfeed him because they needed to be in control of his glucose and insulin while they rid his body of the ketones that were poising his blood. It was a very long night with pretty much no sleep.

The next few days are a blur. He was officially diagnosed with Type 1 (T1) Diabetes, and we rushed to get him enrolled in the military program that helps our family when we have a family member with special needs; EFMP– Exceptional Family Member Program, we needed to be enrolled so we could try to stop our move to Okinawa because they do not have the military medical professionals on the island to treat insulin dependent diabetes. We knew right away, with Baby’s diagnosis the kids and I would not be moving, but we were desperately trying to make it so Paul wouldn’t have to go without us.

So that’s why we aren’t moving to Okinawa. I am still very sad, for a lot of reasons. I’ll write another post and finish the story later this weekend. I need to dry my eyes and drink some coffee right now. I’ll leave you with a picture of my precious little boy, being a brave dude with his little robot arm, that protected the only IV line that he didn’t blow out the first few days in the hospital.